developing a health-related understanding of lifestyle ... · using the lifestyle genetic test...

Developing a health-related understanding of lifestyle direct-to-consumer

genetic testing by users4th European Technology Assessment Conference

4 – 6 November, Bratislava

Wiebke Sick

05.11.2019 Wiebke Sick 2Focus, 22.12.2018, no. 52, pages 84-90 / WISSEN

Introduction

• Direct to consumer (DTC) genetic tests are usually sold online without consulting physicians

• Predictive genetic tests on disease risks or lifestyle genetic tests without medical purpose

• Pro: Enables changes in lifestyle (Guasch-Ferré et al. 2018)

• Con: may provoke anxieties (Su 2013)

• Clinical benefit questionable (Bates 2018;

Covolo et al. 2015)

05.11.2019 Wiebke Sick 3

https://www.23andme.com/

Situation in Germany

• Genetic testing for medical purpose is restricted to medical professionals

• Increased media coverage in the last few years

• Sold online or by consultants• Hybrid of an user and a

commercial provider


https://www.cogap.de/de/

Procedure of use

Order at consultant

Cheek swab

Lab analysis

Receiving of report

consulting Source: Deine DNA. Deine Diät. MetaCheck fitness. Musterauswertung zu Trainingszwecken.


Sampling

Customers

Consultants Personal Trainers

Non-medical practitioners

Medical practitioners

Provider Reports

Sales associate


DocumentaryMethod (Bohnsack 2010; Nohl

2010)

Visualisation of genetic information of the body


• Genes as basic information of the body• Individuality• Unalterability• Determining and

absolute• Central role of genetic

testing in gaining of knowledge about the self

• Visualising with technical device (genetic test)• Seemingly objective and

scientific representation (Duttweiler 2018; Lupton 2016)

• Allow informed decision• Control (Ruckenstein 2014)

Using the lifestyle genetic test

Consultants

Diagnosis Efficiency

Optimising Service

Customers

Weight loss Healthy living

Impression ofcontrol over

diseases

Display ofgenetic family

traits


Healthy living and optimising

but (.) I think you do it only once in a lifetime, and then you really know (.) if you eat something, if it's sugar or if it's fat or if you know it's high-carb; you know it's good or not; (.) and I found that pretty exciting //mhm// and positive and then I actually started to tell my customers about it,

(Interview G, consultant; paragraph: 2; translation by the author)

and with that I noticed that people (.) suddenly (.) have changed the quality of life completely and really, they were- came back with feedbacks saying wow I am fully awake or I feel fully comfortable or I can sleep well again, um and they find it totally easy to do that

(Interview G, consultant; paragraph: 8; translation by the author)


Impression of control over diseases

I've already dealt with genetic analysis in another context and for example froze my father’s blood, //mhm// because my father is suffering from Alzheimer's disease, [...] and uhm I wanted to have the health insurance company pay me the test to see if I also have the predisposition to it; //yes// right one can have this checked on the basis of genetic tests on the basis of //mhm// of the blood of the father, that is of the sick person in the family in the previous generation and it would be great if we also had something of my grandmother from the previous generation; because she also had a very strong dementia of old age; [...] yes and that was also still the focus to see if you can perhaps find out by a DNA analysis in the field of nutrition how you can nourish perhaps already prophylactically //yes// to simply push it to the back;

(Interview O (customer); paragraph: 6; translation by the author)


References


• Bates, Mary (2018): Direct-To-Consumer Genetic Testing. Is the Public Ready for Simple, At-Home DNA Tests to Detect Disease Risk? In IEEE pulse 9 (6), pp. 11–14. DOI: 10.1109/MPUL.2018.2869315.

• Bohnsack, Ralf (2010): Documentary Method and Group Discussions. In Ralf Bohnsack, Nicolle Pfaff, Wivian Weller (Eds.): Qualitative Analysis and Documentary Method: In International Educational Research: Verlag Barbara Budrich, pp. 99–124.

• Covolo, Loredana; Rubinelli, Sara; Ceretti, Elisabetta; Gelatti, Umberto (2015): Internet-Based Direct-to-Consumer Genetic Testing: A Systematic Review. In Journal of medical Internet research 17 (12), e279. DOI: 10.2196/jmir.4378.

• Duttweiler, Stefanie (2018): Daten statt Worte?! Bedeutungsproduktion in digitalen Selbstvermessungspraktiken. In Thorben Mämecke, Jan-Hendrik Passoth, Josef Wehner (Eds.): Bedeutende Daten. Modelle, Verfahren und Praxis der Vermessung und Verdatung im Netz. Wiesbaden, s.l.: Springer Fachmedien Wiesbaden (Medien • Kultur • Kommunikation), pp. 251–276.

• Greco, Monica (2013): Wellness. In Ulrich Bröckling, Susanne Krasmann, Thomas Lemke (Eds.): Glossar der Gegenwart. 5. Aufl. Frankfurt am Main: Suhrkamp (Edition Suhrkamp, 2381), pp. 293–299.

• Guasch-Ferré, Marta; Dashti, Hassan S.; Merino, Jordi (2018): Nutritional Genomics and Direct-to-Consumer Genetic Testing. An Overview. In Advances in nutrition (Bethesda, Md.) 9 (2), pp. 128–135. DOI: 10.1093/advances/nmy001.

• Haggerty, Richard D.; Ericson, Kevin V. (2000): The surveillant assemblage. In British Journal of Sociology 51 (4), pp. 605–622. DOI: 10.1080/00071310020015280.

• Lupton, Deborah (2016): The Quantified Self. A Sociology of Self-Tracking. Cambridge: Polity.• Nohl, Arnd-Michael (2010): Narrative Interview and Documentary Interpretation. In Ralf Bohnsack, Nicolle Pfaff, Wivian Weller (Eds.):

Qualitative Analysis and Documentary Method: In International Educational Research: Verlag Barbara Budrich, pp. 195–217.• Ruckenstein, Minna (2014): Visualized and Interacted Life. Personal Analytics and Engagements with Data Doubles. In Societies 4 (1), pp. 68–

84. DOI: 10.3390/soc4010068.• Su, P. (2013): Direct-to-Consumer Genetic Testing: A Comprehensive View. In The Yale Journal of Biology and Medicine 86 (3), pp. 359–365.

Building of “data doubles”


• Seperating of the human body in data streams (Haggerty und

Ericson, 2000)

• Generating actionable knowledge

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